Understanding Diabetes and Celiac Disease

As a teenager, Rachel Van Bokkem worked at an Italian restaurant, where she regularly ate her fill of pasta, pizza, and bread. Mysteriously, though, she wasn’t gaining any weight. She often felt tired, and meals were routinely followed by trips to the bathroom. But as long as Van Bokkem, who has type 1 diabetes, covered the carbs with insulin, her blood glucose remained in range, so she wasn’t too concerned. “I didn’t recognize the symptoms I was feeling as being sick,” Van Bokkem says. “It was just my normal.”

Her doctors suspected otherwise. When she went in for a routine checkup, Van Bokkem, who also has thyroid disease, had her blood drawn. Her thyroid levels were off, possibly because of changes in how her thyroid medication was being absorbed. Her physicians noted that she was also inexplicably thin. The mix of symptoms prompted them to screen for a condition Van Bokkem had never heard of: celiac disease. The tests came back positive, turning her diet—and, ultimately, her life—upside down.

The Basics

Like type 1 diabetes, celiac disease is an autoimmune disorder, which means the body attacks and damages its own cells and tissues. In the case of celiac disease, the body reacts negatively to gluten, a group of proteins found in grains such as wheat, rye, and barley. When people with celiac disease eat gluten, their immune system attacks the small intestine. This harms the villi, finger-like tissue structures that line the intestinal wall and absorb nutrients from food. When they’re damaged, the villi can’t do their job. The result: The body doesn’t properly absorb crucial vitamins, nutrients, or medications.

The Symptoms

There are a large number of celiac disease symptoms, but people with the condition might notice some common signs. Adults and children alike can experience diarrhea and gastrointestinal issues, weight loss, and an upset stomach. Kids, however, are more likely to struggle with growth failure, muscle atrophy, delayed puberty, poor appetite, neurological problems, and osteomalacia (softening of the bones). Adult symptoms can be subtler; they include fatigue, anemia, infertility, osteoporosis, joint pain, mouth sores, and neuropathy.

The Diabetes Connection

Around 1 percent of people in the U.S. have been diagnosed with celiac disease. In comparison, 10 to 15 percent of people with type 1 diabetes will develop the condition. “The genes that predispose risk for type 1 diabetes and celiac disease are shared,” says Aaron Michels, MD, a professor of pediatrics and medicine at the University of Colorado Anschutz Medical Campus. “They’re involved in immune function and probably why our bodies see insulin-producing cells as foreign and potentially why they see gluten as foreign.”

Although genetics play a large part, they’re not the only culprit. “Genes put people at risk, [but] it’s like stacking up dominos,” says Michels. “Something else has to come along and knock those over, maybe even twice, to get all the dominos to fall down. Those, we think, are things from the environment.” Possible external triggers range from gastrointestinal infections to infant feeding practices.

Once someone has an autoimmune disease, they’re much more likely to develop others. Van Bokkem is a prime example: She has celiac disease, type 1 diabetes, and an underactive thyroid (hypothyroidism), which is usually caused by an autoimmune disease called Hashimoto’s disease. Hypothyroidism is treated with synthetic thyroid hormone. But having undiagnosed celiac disease can complicate things. “Since I wasn’t absorbing nutrients while eating gluten, my thyroid medication wasn’t being absorbed as well either,” Van Bokkem says. “This caused my thyroid levels to drop. Eating gluten free helped raise my thyroid back up because I began absorbing my medication.”

The Screening

The American Diabetes Association (ADA) recommends screening for celiac disease soon after a diagnosis of type 1 diabetes. (No such advice exists for people with type 2, as their condition isn’t genetically linked to autoimmunity or celiac disease.) A simple blood test can check for celiac antibodies; people should continue eating normally before they’re tested because going gluten free too soon might skew the results. The only surefire way to confirm a celiac disease diagnosis is with a biopsy of the small intestine.

Celiac disease can develop at any age, so a follow-up screening is key even if an initial test is negative. The ADA’s 2019 Standards of Medical Care in Diabetes recommends that people with type 1 diabetes repeat the screening within two years of their diabetes diagnosis and then again five years post-diagnosis. Those who have a relative with celiac disease may require more frequent screenings.

The Treatment

Celiac disease is chronic; there is no cure. “The only treatment is a strict, lifelong gluten-free diet,” says Edwin Liu, MD, a pediatric gastroenterologist and director of the Colorado Center for Celiac Disease at Children’s Hospital Colorado. The diet helps relieve symptoms and allows the intestine to heal.

Gluten-free foods are currently trendy, so the diet is easier than ever to follow. Still, it can present some challenges for people with diabetes. For one, giving up gluten might complicate blood glucose management as the body starts absorbing nutrients differently. And even tiny amounts of gluten are bad for people with celiac disease. In addition to avoiding the obvious culprits—such as bread and pasta—people with celiac disease must watch out for foods in which gluten is used as an additive and filler. “It’s hidden in things that you wouldn’t even think of,” says Jacalyn See, RDN, LD, a clinical dietitian at the Mayo Clinic in Rochester, Minnesota. Those sneaky sources of gluten include soy sauce and some hot dogs.

Cross-contact—the contamination of otherwise “safe” foods with gluten—is also a risk. It can occur by, say, boiling gluten-free pasta with regular pasta or cutting a tomato with a knife that was previously used to slice bread. At home, separate utensils, cutting boards, pans, and pots, and a regularly cleaned oven, can make meal prep safe. Things get trickier with dining out, so people with celiac disease need to be vigilant about how their food is cooked.

“It is important to let the staff know you have celiac disease,” See says. “Ask how they control for cross contamination: Do they have a separate kitchen, separate grill, separate fryer? Will they clean the grill before preparing their meat?”

Finally, just because a food is gluten free doesn’t mean it’s healthy. Some gluten-free foods are loaded with unhealthy saturated fats and sugars.

Many physicians recommend that people diagnosed with both celiac disease and type 1 diabetes consult with a registered dietitian, who will suggest meal plans and help with navigating restaurant menus and food labels. Some also recommend seeing a therapist, as both type 1 diabetes and celiac disease have been linked to clinical depression. “It can be very hard for those patients with diabetes to be strictly adherent to a gluten-free diet,” says Hilary Jericho, MD, director of pediatric clinical research at the University of Chicago Celiac Disease Center. “It’s a lot, emotionally.” Therapy can help people cope with their emotions, and peer support groups can provide solidarity and lifestyle tips.

The Lifestyle

Van Bokkem, now a 25-year-old independent historian in Baltimore, has followed a strict gluten-free diet since being diagnosed with celiac disease eight years ago. Once she adjusted her eating habits, the fatigue and diarrhea disappeared. Reintroducing gluten through accidental cross contamination—even in small doses—can cause Van Bokkem to develop cramping, headaches, and abdominal pain within one to two hours after a meal.

Support from loved ones makes her life easier, as does cooking meals at home. “My family completely switched over to gluten-free products, like gluten-free bread,” she says. “We have separate sponges for when we’re washing the dishes; we have separate toasters; we have separate pans. It’s to the point where we have a very controlled environment to make sure I don’t get sick.”

The lifestyle is challenging but doable. And while she misses old favorites such as chicken nuggets and bread, Van Bokkem says the trade-off is worth it. “Once I cut all gluten from my diet, I realized what normalcy felt like.”

Got Gluten?

Naturally Gluten-Free Foods

Butter and milk

Corn tortillas

Eggs

Fresh fruits and veggies

Legumes

Quinoa

Rice

Unprocessed potatoes

Yogurt

Surprising Sources of Gluten

Canned soups and sauces

Chewable vitamins

Communion wafers

Corn flakes and rice puffs

Gravies

Imitation meat or seafood

Licorice

Malt

Oats (sometimes grown next to wheat)

Processed meats

Restaurant scrambled eggs or omelets (might be made with pancake batter)

Salad dressing

Soy sauce

Sounds Similar

An ever-increasing number of people are opting to steer clear of gluten, but that doesn’t mean they all have celiac disease. Some have a gluten sensitivity, which can closely mirror celiac disease. People with non-celiac gluten sensitivities don’t have the autoimmune disorder, but they might notice digestive problems, lethargy, headaches, joint pain, and other issues after ingesting gluten. The only way to keep symptoms at bay is sticking with a gluten-free diet.

Another reason some people pass on the bread? They have a wheat allergy, which occurs when the immune system reacts adversely to a non-gluten food protein found in the grain. People with wheat allergies typically don’t have issues with other types of grains, such as barley or rye, or gluten in non-grain foods.